CFS and loss of voice?

Discussion in 'Fibromyalgia Main Forum' started by Pakuranga, Aug 21, 2003.

  1. Pakuranga

    Pakuranga New Member

    Hi I am new to this message board.
    I was wondering if anyone else out there suffered from a loss of voice when they were unwell with CFS? I have been unwell for over a year and had to give up my teaching job. I had a bout of flu, just like many of the kiddies in my class and many of them had laryngitis. My voice went too. In the last twelve months (slightly more) my voice returns briefly for a couple of days, then goes again. In the morning when I wake up, for the first hour or so it's not too bad, but then it deteriorates until by the evening it is a struggle to make audible sounds. I have been to four ENT specialists who have even videoed what my vocal chords aren't doing. But my last encounter with an ENT specialist at our local hospital was the most outrageous. He questioned why I should need a voice, after all I am married? He was from a different culture and was hardly sensitive to my cultural needs. Finding it so difficult to make sounds, I didn't bother explaining why I needed a voice. He also suggested that he and his colleagues could experiment with my vocal chords and inject something into them to plump them up so they could meet when I tried to speak. I declined the "experiment!"
    If my voice does perform properly in the morning when I get up, I can see no reason to allow anyone to "experiment" on my vocals.
    An Endocrinologist who originally diagnosed me with a "variant of chronic fatigue syndrome" nine months ago said he'd never seen voice loss in a CFS patient before. The same message has come from all the other ENT specialists and the 2 doctors I have seen in the last year.
    Has anyone else with CFS got this problem? If you have I would really love to hear from you or should I be looking for another diagnosis? I have searched the web for reasons why people lose their voices and treatment, but my voice doesn't quite fit anything I can find.
    The other problem I have had with the medical and alternative medicines people, is that it seems to be a bit beyond them and they are very happy to refer me onto someone else, because what ever it is that's causing my problem, it's not their area of expertise. As a result, my GP has now become my "Expert" but he openly tells me that he hasn't got any other patients with a long-term illness like mine and he too doesn’t know what to do with me. At least he’s honest. I feel quite disillusioned with the medical fraternity. Every week the media reports wonderful things that are happening in the development of medicine, but they sure aren't happening in my tiny corner of the world.
    I have been ill like this before but for much shorter periods of time. I lost my voice for about 10 weeks in 1993 and for about 14 weeks in 2000, but both times I was not as fatigued as I have been this time. Were they perhaps a warning that I didn’t heed?
    Until now, I have always been a very energetic person. Now it’s a struggle to stay interested in anything and with not having a voice, it has brought my social interaction with the outside world to zero. My colleagues at work can’t understand why I don’t visit them in their staffroom, which is noisier than any classroom I’ve ever worked in. They all talk at once and get louder and louder when they find that they can’t make themselves heard.
    When you can’t participate it’s amazing what you notice. Visiting them was totally exhausting so I stopped trying many months ago. And because none of them can relate to what it is like to be ill for such a long time they seem to think it’s in my head, although none of them have been brave enough to say that to my face. Quite frankly I’m ashamed to admit that I once fitted in quite nicely.
    I have mourned the loss of my career, the loss of colleagues who I had thought were my friends and the loss of a fairly interesting and stimulating life. What is in store for me? I had a brother who died of Cancer earlier this year and I find myself quietly envying him – at least his terrible illness came to an end, but I must be careful not to say that to any well person.
    If there is anyone out there who is having a similar problem with their voice, please get in touch with me. I would really like to hear your story and perhaps derive some ideas from your experience or make some suggestions to my own GP of things we could look at.
    Desperate Pakuranga
  2. cmcm

    cmcm New Member


    So strange to see this post on voice loss. I was just talking with someone yesterday about her sister who is ill with FM. I'm not sure if she has CF as well.But she said she was crying yesterday because her sister called. Which wouldn't mean much to some, but she hadn't heard her sisters voice for four years. Her doctors were stumped and didn't know why. But they tried something and it worked (so far anyway). Flonese (spelling), the nasal spray. So maybe you can ask your Dr. if you can give it a try. Good Luck.

  3. Spoonerpaws

    Spoonerpaws New Member

    I get very hoarse and my voice gets raspy (especially if I have been on the phone for awhile) Happens alot

    One thing you might want to check into - My husband lost his voice for 6-8 weeks, (man, was it quiet!) The doctor dx was a virus that attacks your vocal chords.

    I thought the doc was crazy, but since then, I have heard others dx with this!
  4. stillafreemind

    stillafreemind New Member

    Has anyone looked into your adrenals by any chance? The reason I bring this up is..I used to sind jazz..sot to where I just could not do it anymore. I did not notice much about my voice..BUT, since I have started treatment for my doc and expecially my Mom have commented on my voice being so much better. Doc said that fatigued adrenals can affect so many things..the voice being one of them. They both said my voice has gotten stronger and higher. Go figure.

    Just thought this might be worth a try for ya. Good luck in your quest.
  5. teacher

    teacher New Member

    Let's compound the problem. I'm a MUSIC teacher and I lose my voice.

    It usually happens when I'm tired. I have also discovered that when my voice disappears, it's a warning sign that I'm getting ready to crash and I need to back off. Everyone learned to deal with this pretty quickly. My pricipal was an unbeliever until I fell apart a staff meeting at the beginning of the last school year.

    I read a reply that said to have your adrenals checked. Good advice. You may want to look into your sinuses also. Sometimes those can give you trouble.

    You are very smart to refuse to allow someone to "experiment" with your vocal chords. Once they are damamged, that's it.

    About you quitting teaching. I realize it's something you didn't want to do. Had you thought about setting up a small PA system in your classroom? Sometimes we put more strain on our voices trying to talk over children than we think. Sometimes that bit of electrical boost is all that's needed to keep us from working so hard.

    Also, could you maybe look into being a tutor or something like that with in your school system? Smaller groups of children where they do most of the talking. You're still teaching but giving your voice a rest. Maybe you could find a place that hires teachers for tutoring like Sylvan Learning Center or something similar. Maybe you could even start your own tutoring business out of your home?

    Also, hydration, hydration, hydration. Are you drinking enough WATER. Not just juice or whatever. Sometimes we just don't give ourselves enough of the original thirst quencher.

    Caffinated drinks are very drying to the vocal chords. If you must have caffine (sp?), be sure you chase it with water. Also, be aware that while antihistamines dry up your nose, they also dry out your chords. Chase that with water also.

    Don't give up. Be thankful that your GP at least listens to you. But you may want to check around anyway and see if there's a doctor in your area that deals with CFS. You may not neccesarily want to change, but your current guy might like to know that there is someone else out there treating this and love to have someone to talk to.

    If you're still wanting to have your former collegues as friends, invite them over sometime, right after school, for snacks. Play soothing music QUIETLY in the background. Light scented candles. Set a quiet atmoshpere. They won't be so quick to talk loudly. They'll be tired after a long day of work. You can relate to the schedule, you were there so you'll be able to pick a fairly decent time for when a small break is needed.

    I say to do it right after school because you can deliberately keep it short. They do need to get home and grade papers, know. :) This also keeps you from burning a lot of energy that you don't have.

    I'm not going to say not to get frustrated. There are days that you will. Keep trying. You'll find a way to work with this new limitation. I'm still trying myself.

    So, chin up girl! You're a teacher! You can do anything as long as you get at least one potty break every 8 hours!!!


    P.S. I just thought of something else. You said that you are starting to look at things differently since you started losing your voice. It makes you pay more attention to other things.

    How much would it take for you to get your certification in counseling? You don't have to talk much. Most people don't want someone to talk at them, they want someone who's willing to listen. A well placed, well thought out sentence here and there is all that's needed from you. Counsleors (sp?) are very needed in the schools.

    Please remember, this entire reply is just my opinion. Everybody has one.

    God bless you in this struggle,
  6. beh43

    beh43 New Member

    Hi Pakuranga,

    I was also a teacher. I taught Sp. Ed. prior to CFS. I started having loss of voice while teaching and it has continued with hit and miss episodes. I had epstein barr in 1992 and became unable to teach in 1999. I fought hard but the CFS kept knocking me down to being bedridden about every two years. I miss the classroom and hope that soon a cure will be found and I can go back to the profession that I love. Your story sounds very similar to mine. I to miss the interaction with other teachers and students but I find it so overwhelming I have become very isolated. I am mostly homebound with my husband and two dogs. I use a scooter to get around and have stopped driving due to the quirks of CFS.
    I haven't had great luck with the medical profession in the past either. I have three doctors who really try to help and the rest are unbelievers. Maybe soon we will get the respect we deserve for this debilatating illness.

  7. FM58

    FM58 New Member

    I teach also. I work with autistic children. I just found out that I have thyroid nodules. I keep getting a horse voice or losing it completely. Last fall when I had bronchitis, I had laryngitis for over 2 weeks, and again w/strep in the spring. So far no where near as long as yours - but I have other throat symptoms (I posted under thyroid nodules). I've seen an ENT, and GI doc did endoscopy, he's referring me back to my neuro. So it's back to the neuro next week. I haven't heard from my ENT yet. It is quite frustrating to not have a voice, or to sound like that "dumb squeeky blonde" and I am blonde.

    I would suggest having your thyroid checked esp T3 & T4. Apparently the ENT believes the thyroid problems are affecting my voice, he has known me as a parent for years (treating my son) & now I'm his patient - so he's heard my normal voice & my horse voice. I'm still waiting for the results of mine, but if you haven't had that checked at least suggest it.

    Good luck!!

  8. Hinemoa

    Hinemoa New Member

    I thought you were a New Zealander, I'd recognize those never-to-be-forgotten Maori syllables anywhere.I was born in NZ and lived there for 23 years, I live in Wyoming now, but I love NZ and although I'm happy here I remember my birth-country with great fondness.

    I was a teacher too, long ago. I used to get very hoarse and often lost my voice but I don't think that's your problem. Your inability to tolerate noise and confusion sounds like the sensory overload common to those of us with CFS (ME) and/or FM.

    The others have given you good advice, please look into it.

    Go to the message board on the green background and click on, scoll down to the chit-chat board and we can talk it you'd like.


    P.S. NZ is quite active in CFS/ME research. You may have to travel but it would be worth it to get someone to take you seriously. Make no mistake, this IS a serious disease.


    [This Message was Edited on 08/22/2003]
  9. Shirl

    Shirl New Member

    Shalom, Shirl
  10. Pakuranga

    Pakuranga New Member

    Thanks so much for your qiuck replies. I need a bit of time to read over them and filter through what I have already tried and which thigs are new. I intend to make a list of things to suggest to my Doctor and see if they are avenues we can explore. I shall get back to each of you over the next week. So mant replies and not enough energy to do each one justice at the moment. Thanks for your support. You have all lifed my spirits more than you can imagine. I no longer feel so isolated.
    Cheers Pakuranga
  11. Annette2

    Annette2 New Member

    My suggestion is to see a qualified Speech Therapist!!!! It must be someone with a Master's Degree or Ph.D. education. The right one will be able to diagnose and help you with your speech problems. Most big hospitals have Speech and Hearing Depts. and if the people there can't help you they can probably refer you to someone who can. By the way, where do you live?

  12. Karen M

    Karen M New Member

    I have noticed this year that I have a slight loss in my voice when I am having a bad time with my fatigue. I think if my bouts of fatigue were to get worse that I would lose my voice. I just end up resting alot more and it gets better. This didn't use to happen to me and does more frequently now. I don't have any advice other than plenty of rest. So sorry. I wish you the best of luck with this.

  13. mitch123

    mitch123 New Member

    I'm a kiwi (the only one here I think) that lives in Howick, were almost neighbours!
    Sorry to hear about your struggles, I to have CFS, the only suggestion I could add would be to go see my Traditional Chinese Medicine Doctor, she may be able to help you. She works in the Howick Mall.
    Welcome to the board
  14. Pakuranga

    Pakuranga New Member

    I don't suffer from post nasal or sinus problems so the nasal sprays probably won't be of any assistance to me. I'm pleased to hear that your frind's sister had success through that avenue though. Regards Pakuranga